Context: my wife, Phyl Gerber, was diagnosed with Lou Gehrig’s Disease on March 15, 2017. I was her primary caregiver while she experienced loss after loss until she died on June 15, 2020. The ALS community has shorthand for a person who is a caregiver for someone living with ALS. We are called CALS (caregiver for ALS) and the person with the disease is a PALS (person with ALS).
I was moved by an essay written by someone who served as a CALS for more than 10 years until her PALS passed. She wrote on our Facebook Group… “I found myself over the years of caring for my PALS thinking of the phrase, ‘the two shall become one’ and sadly smiling.” Her essay inspired me to share my own experience as a CALS for Phyl over 3-4 years on the same Facebook group which is exclusively for caregivers for people with ALS. It was written without naming Phyl because the group members don’t know her… so she is referred to as “my PALS”.
John M. Gerber
August 2019 (updated April 2021)
When first diagnosed, my PALS suffered anxiety, fear, a sense of loss, a feeling of being cheated out of a “normal” aging process, and deep, deep sadness. As a CALS, my job was to be supportive, to listen, to love, and care for her to the best of my ability… and not to try to “fix her” – which of course was my first instinct. Early symptoms were merely annoying; dropped silverware, an occasional trip on a crack in the sidewalk, an inability to open a jar because of weakened hands. Our long hikes in the mountains (we climbed two 13,000 ft. peaks in Colorado) become shorter and on flatter terrain. Bike rides were no longer 30 miles in the hills but 8 miles on the bike path for a fruit smoothie.
Adjustments and adaptation became part of our daily routine, and as long as we didn’t project too far into the future, it was relatively easy to manage. We tried to live “one day at a time” and deal with whatever came up that day. And while I read as much as I could about the disease…. I had no idea of the trials we were going to experience but I began to understand what it is like to know that I don’t know what will come next.
As my PALS began to show more pronounced symptoms, I gradually assumed primary responsibility for the laundry, dishes, house cleaning, gardening, shopping, cooking, making beds, paying bills, and all the routine things that were once shared by two. Over time and gradually (through trial and error …. lots of errors) I began to assist with more personal things like dressing and undressing, showering, stretching out muscles that were no longer being used, and transfers from a power wheelchair to bed or toilet.
Then there were the disease specific tasks of managing medications, feeding tube, setting up the respirator at night, doctors’ visits and home visits from various professionals, and the most frustrating of all…. dealing with insurance companies. Fortunately, the changes were slow enough not to throw us into a permanent state of crisis. Each of these tasks was acquired (more or less) gracefully over time and generally with good cheer by both of us. Prayers and an “attitude of gratitude” helped reduce the momentary resentments and frustrations. Sadness was balanced with joy, and fear was pushed aside by faith in a power greater than myself. Gratitude for the things that we have today (family mostly) and have had since I met this 15-year old girl in the cafeteria of our high school more than 50 years ago continued to grow as the disease continued to progress.
My PALS presented a positive attitude to the world. She was told how good she looked and how remarkable it was that she continued to be active. She was told “she is an inspiration”… and she was. And then from time to time, in the privacy of our home, she fell apart and could not stop crying. It happened rarely and was more likely to be triggered by “a broken shoe lace” (something minor) rather than something big that needed our attention (like a pill she couldn’t swallow or a throat spasm that made it hard to breath). As I hold her while she sobbed, my (unspoken) advice to her that she should “accept the things she cannot change” then turned back on me and I needed to take my own advice. I could not “fix her” and I needed to practice the acceptance that I preached myself. So I just held her and didn’t say anything. Acceptance was not so easy when it was my turn.
Nevertheless, I learned that acceptance of things we cannot change is critical to daily living. Acceptance is not resignation (giving up) nor is it approval (its NOT okay – it is a lousy deal she was dealt). Acceptance is a prayer and a practice that allowed me to get through the day and often experience a sense of peace and serenity even when things got tough. And then it all fell apart again….
As the disease progressed, the simple daily tasks included repeating what she just told the guy at the supermarket fish counter who couldn’t hear her yell at the top of her voice “one pound of salmon please”, or setting up her amplifier so she could talk to a friend on her cellphone, wiping tears or nose or butt, and setting up a book tape or a TV show to try to ease the boredom. One of the “dangers” of being a full time CALS seemed to be that I tended to think of little other than ALS and “what does my PALS need now.” I found myself sitting among friends while they discussed their latest trip, meal, purchase, or work challenge thinking “why are we not talking about my wife and ALS, or at least something important like living and dying?” I mostly didn’t say anything.
The person who inspired me to write this post wrote in our Facebook Caregivers Group that we become “one with them.” Sometimes I felt this way, yet I knew this isn’t entirely true. I could not suffer the disease directly, although I (think I) would have gladly done so if it gave my PALS relief. She had her own journey and while I could walk alongside, I could not do it for her. I was “one with her”… and not.
But something else surely is true. In very surprising ways, a feeling of oneness made my love for her deeper in ways I cannot describe. While I would not wish this experience on anybody, one of the unintended outcomes of the disease was that we became deeply connected to each other in ways that people living “normal” lives may not know (maybe they do, but it is not apparent). I kept “falling in love” with this girl I met in the high school cafeteria… over and over. And strangely enough, I learned much about myself. I came to know who I was, and what I was capable of doing because I was “stretched” beyond anything I ever thought possible.
I surely did not like that the love of my life needed a caregiver…. but I found this to be the most rewarding job I’ve ever had. And my constant prayer was to be allowed to continue to be a caregiver for her… for just a little bit longer.
But that was not to be…. either. Phyllis Anne Sephora Ebner Gerber, my wife of almost 48 years passed away peacefully on June 15, 2020, surrounded by her children, lots of flowers, a rose scented candle, and Beetles music. Phyl just ran out of time. Her breathing had been getting worse for the past year and finally her lungs quit on her, even with the mask and respirator.
My job for 3-4 years as PALS was to be prepared for whatever came next for Phyl, and I was good at it. What I was not prepared for was living my life without her…..
For more on my experience as a caregiver, see:
3 thoughts on “A Caregiver Perspective”
With my amyotrophic lateral sclerosis (ALS), the first thing that happened almost 2 years ago now, was speaking as if I were drunk. I wasn’t. I initially did improve speech (articulating clearly but slow) but now I can no longer speak in an acceptable way. Then, a year later eating became problematic, I was biting my tongue and lips, and chewing became weak and less controlled. Soon after that some fingers started to fail me and things would drop out of my hands. Somewhere at that time bulbar ALS was diagnosed. The Rilutek (riluzole) did very little to help me. The medical team did even less. My decline was rapid and devastating.. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment, Our care provider introduced us to Kycuyu Health Clinic ALS/MND herbal treatment. The treatment is a miracle.i recovered significantly